Enjoy the Ride…

So we have come to the end of the school year and summer vacay looms like the Kalahari. Not that I’m concerned about scheduling. We still have at home ABA three times a week, we’re about to start horse riding therapy and we joined the Y, so the swimming. It’s our first summer without ESY (extended school year , or summer school) but I’m not too worried.

Yesterday we had the lil kindergarten culmination. I was pleased that it wasn’t a full blown graduation, because, well–those things go on FOREVER, and while it is an important milestone, I don’t think it needs caps and diplomas. But remember–I’ve got a kid with autism–you may see sweet ceremony, I see sensory nightmare. tomato, wankle-rotary engine.

(high fives any MP fans who just got that reference)

Anyway, they sang two songs had a lines and all the kids stepped forward to tell us what they wanted to be when they grew up. a sweet lil 10 minutes or so. All very cute. And my boy was up there participating with the best of them.

And naturally, I was a snotty-cry mess.

If you had told me at the last preschool event like this that my son could do this without support or me standing there with visual cues/reward system, I would have given you the stink eye. In fact, when the teacher told me he does just fine with these public events, I believe my reaction was gobsmacked disbelief.

Because what I remember is him REFUSING to participate, laying on the ground with his hands over his ears, screaming. EVERY. TIME.

Yes, time, maturity and proper modeling has been the key. And, I will confess with some sadness, he DOES do better if I am not (or he doesn’t know that I am) there. In fact, he was starting to meltdown yesterday before the performance because he knew we were going out for ice cream after and wanted to go NOW. But once we were out of sight and he was with his peers, he pulled it together and really made it work. And I became the one who melted down

The tremendous growth we have seen since he came to this school is amazing. You will remember that I was terrified of inclusion, and there are certainly still moments when I miss special day with every fiber of my being. Inclusion has been a roller coaster ride for me (and him) because it is a skip to the front of the line/feel ALL the feelings/sink or swim kind of experience. I am confronted with my son’s differences every day. Even yesterday. Were any other parents crying because their child was able to say he wanted to be SOMETHING when he grew up? As in imagine? Nope. Just me. Were any other parents crying because their child had speaking lines, AND SAID THEM at the right time? Nope. Just me. Were any other parents crying because they knew there was a whole team in place, working together to make sure this kid could bring home a report card that was all 3s and 4s (new fangled grading system–proficient and advanced) and statements like “child has improved in ALL areas” and is an “enthusiastic learner”?

You know–the things we see at home, but it always feels like no one else ever does?

It’s still hard to see him on the playground, when kids are mean to him, or simply won’t play with him. But it is equally comforting when I see kids that will take the time to include him and help him play.

I won’t lie. I still feel very alone among the parents. Part of that is certainly my own misanthropy and hermitude. But there is also a lack of common vocabulary and experience that often leads to me having to “explain” or “educate” that is frankly a little tiring. They talk about things like soccer and dance class, and I don’t have that similar language, because my language involves therapy and accommodations. And I try to sympathize or laugh along, but I don’t know what it’s like to be in charge of the snacks, or to have to juggle those schedules.

Nor do they know what it’s like to have therapy 4x a week, working working working in order to improve enough to attempt those schedules. Someday. Maybe. But I also recognize that our lives are similarly busy.

I was at at Autism parents meeting last week, and listening to the parents from special day class made me nostalgic and jealous. All the while recognizing that my experience is also not like theirs. For example, we were talking about bullying, and they weren’t really worried–because special day class can be very insulating and safe. Yet, when I met eyes with the only other parent with an included child, I could see the worry that mirrored my own. Our kids are in the thick of it, with targets placed firmly on every flap. The parents from special day had worries that were not mine, but I had worries that didn’t even register on their radar.

A stranger in a strange land.

So you see what I mean when I say it is a roller coaster. All I can do is put the lap bar down and hope the safety checks have been done to keep the train on the track.

Well, and to sometimes throw my hands up in wild abandon on the loop-de-loop.

I will give one thing to this ride–it has forced me into a far more authentic life than I would have imagined. And while I still have not managed to learn to cry prettily, I am grateful for every damn tear.

So enjoy the summer y’all. be sure to wear plenty of sunscreen and enjoy this camp or that. We’ll be here, watching Youtube videos, creating visual schedules and playing in the sprinklers. As one does.